I need advice… and an update.

Living On Oxygen for Life

I’m alive!!! I know… It’s been since November 2018 that I’ve written on my blog. There’s huge reason for that. We all know that the holidays are difficult being that it’s stressful and cold, not to mention, it’s also flu season. So, I stayed indoors a lot. K got me a PUPPY! I love her but she is super energetic and wore me out for the first month. Who am I kidding… she still wears me out but it’s not as bad as it was when we brought her home. FYI: She gets car sick. UGH! For those of you who follow me on Facebook or Instagram know most of this. In fact, if you don’t follow (which is totally ok!), I have a section down on the bottom of the right column of my blog that shows my Facebook and Instagram feed! Yay how convenient, right? No need to have the app!

I also ended up in the hospital in January due to severe shortness of breath and inflammation of my lungs and the doctors couldn’t figure out what caused it. That is so frustrating, am I right? I’m sure you can see me rolling my eyes. haha! When I got home from the hospital, I felt good but a week later, I started feeling worse than when I went into the hospital. You can imagine how nervous and scared I became. Don’t worry though. I put my thinking cap on as well as had a CT Scan with Contrast and a Echocardiogram that showed NO PULMONARY EMBOLISM (Yay!) but it did show that my Left Ventricle Ejection Fraction (LVEF) was 35%. Normal is 55% – 70%. That means my left ventricle (bottom left chamber of my heart) is have a hard time pumping out oxygenated blood to my body. YIKES!

I noticed with my SOB, since my doctor increased my Thyroid medicine, Syntroid, back in November, my breathing became much worse over the course of 2 months time. So, without telling my doctor after I started getting worse again in February, I split the pill in half. I do NOT recommend doing medicine adjustments without discussing it with your doctor. I plan on telling him. Within a weeks time, I started breathing better. K and I started becoming optimistic about my future again. My cardiologist started my on Entresto. He sent my home with samples and asked me to ask my Pulmonary Hypertension doctor to check into any possible interactions it might have with Tracleer/bosentan because he’s not super familiar with Tracleer. It took my PH doctor nearly a week but she gave me the green light to start taking it. I’ve been on it for a week and a half and I think it is causing a moderately annoying side affect of itching on my head, face, shoulders and the back of my neck. So, now I need to call my cardiologist about that. *sigh*

But all of this is NOT what I need advice on. Sorry! I’m getting to it. *grin*

Last Tuesday, I received a phone call from my DME company, Lincare, who services my LIQUID OXYGEN. They told me, as of April 1, 2019, they are stopping all liquid oxygen service. I freaked, even though I was warned by one of my wonderful blog readers, Cindy. Thank you so much Cindy! Lincare gave me the names of 4 companies in my area who still service Liquid Oxygen. One of which I’ve used before years ago and one of them is a Nationwide company called Apria.

What I need help with is: Can any of my readers, who have had experience with Apria, tell me your thoughts of this company. If you have an opinion, please don’t just say that you like them or don’t like them… Please tell me why in the comment section. This could potentially help so many people who use Lincare for their liquid oxygen and have high flow oxygen use that won’t typically benefit well from switching to e-tanks for portability purposes.

To go on vacations, we loved Lincare because they also are a Nationwide company who arranged refilling my liquid oxygen reservoirs at our vacation destinations as long as they had a shop there. Selecting a local company for my future liquid service would definitely make it difficult for any future road trips which is crushing to K. Ok, me too but K REALLY loves the beach!

So, if you can help me with your opinion of Apria, I’d really appreciate it. Thank you so much! *HUGS*

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When you least expect it…

Living On Oxygen for Life

Sometimes life throws us a curve ball and how we react to that can really show us how much of a team we are. We’re not just married and love each other; we are all-in through thick and thin with all the rollercoasters and good times that make up our life.

Throughout this year, K has been telling me that he really, really needs a vacation on a beach. He’s experienced an emergency visit to an ER clinic for himself at which time I had to bail on him because I developed a MASSIVE migraine while waiting in the patient room with him. Thank goodness his sister came to our rescue so that I could go home leaving him there alone until she got there. (I felt so guilty!) He’s had to deal with working in 100+ degrees heat over the summer. There’s also been my up and down health with the fact that I could no longer do the chores around the house that I used to do, which meant that K had to do them. That’s not all of it but you get the gist, right? So, yeah, he really needed a beach vacation.

I told K that, with the way our budget looked, we were going to have to get creative about being able to afford going on vacation. I knew he really needed it but I was concerned, not only for the financial aspect, but also I wasn’t sure if I could make the 10-hour drive this year. I didn’t want to say no. He works so hard and does so much for me. Thus, came his idea. Out of the blue he said that he wants my help in selling all his McFarlane action figures on eBay and that’s what we did.

We got incredible lucky with a German buyer who bought 5 really large boxes filled with K’s action figures, earning enough money to pay for the hotel in South Padre Island. We actually earned quite a bit of money! So, everything was looking good for our vacation plans. That is until K mentioned a little problem a week and a half before we were to leave.

K had noticed some floaters in his GOOD eye and he knew that he was suppose to call the Optometrist right away. They got him in the next morning. A few hours later, I got a phone call from K while he was in the doctor’s office, asking me if I had already taken my diuretic. *cue the drama music* Luckily, I was still in bed because it was only 10am. (Hey… I sleep in! Don’t hate me because I can! *wink*) He wanted me to get up *UGH*, get dressed and he was on the way home to pick me up because he needed eye surgery within a few hours. *Wait..what????*

I was freaking out. I was worried about K having to go through surgery again, having enough energy to be in the waiting room, having to run all the prescription pickups, taking care of K after surgery and then of course paying the copay bill of the surgery, the doctor and the anesthesiologist. What worried us the most was the amount of time K was going to have to take off work. Sick leave and vacation pay only covered most of it but it’s the few days that was unpaid that worried us.

We are NOT rich but we just sold a huge amount of K’s action figures and we had that money but that means we had to cancel our anniversary/my birthday vacation that I just reserved. That hurt… In fact, I cried.

But looking back at this whole situation, this whole thing felt like everything aligned just for this moment. Somebody up there was looking out for us. We’re not out of the woods yet but this shows us how well and how much of a team we are.

Not only K and I are a team but also K’s sister and my sisters too. My older sister came down and cooked 2 quiches and a huge pan of lasagna so that I didn’t have to cook. My sisters and mother kept texting me encouraging support to me, which helped a lot. I’ll try to blog more often. You can catch me on my Living on O2 for Life Facebook page or ChristineLovesDaisies Instagram if you have those apps.

So, this is why I’ve been mostly quiet. I don’t like posting things that seem negative or stressful but I wanted to let you know that we’re ok and alive. =o) Lots of love to you all! *hugs* FYI: if you start seeing a lot of floaters in your eyes, that could be from tears in or a detached retina. Get it checked out ASAP (within a few days!)

It’s blazin’ hot here…

Living On O2 for Life

For the past two weeks or so it’s in the upper 90s and in a few days the forecast is 105 degrees. What that means for me is: Stay indoors with the a/c cranked. Well, that’s what I would usually do but life has a way of creating drama. You know, the kind of drama like your “Check Engine Soon” light coming on when I least expected it. Then there’s the strawberry plants that stopped producing! What? I know… I was nearly devastated. haha! There’s more drama that happened but I don’t want to bore you. I want to tell you about the fun stuff!

K and I were fortunate enough to be able to visit with one of my cousins and her family while they were here with their church. There was a choir event that we went to and wow were the kid who sang good! We had a great time catching up. I hadn’t seen them in over 18 years.

You know from the last post that I’m slowly increasing my experience in yeast bread. Well… I experimented with making Honey Oatmeal Wheat rolls. Unfortunately, K doesn’t like wheat or oatmeal in his bread. Lesson learned! So, I shared them with his mother. See picture in the right column under Instagram. If you scroll down you’ll see them. It was a lot of fun! We also ate our first two ears of corn that K grew. Our experiment with growing corn has been successful thus far. We have 7 more ears left growing from a separate, later planted seeds. Whew.. they were delicious and I hope we plant more next year. I’m making quite the farmer out of my man. I’m SO proud!

Unfortunately, one of our pond goldfish kicked the bucket. He was floating belly up one day and we still don’t know why or what caused it. Rest in peace little man… But, we still have 7 left… so… HOORAY Goldfish! haha! My newest Need a Hug afghan is coming along nicely. I already have the recipient in mind to ship it to. I’m hoping to get it finished within a month. *fingers crossed*

This past week has been terribly hot and humid. It’s been trying to rain but in our area it’s only coming down in the lightest sprinkle occasionally which is making it HARD for me to breathe and tired a lot. I want to try to get that yummy Cinnamon Swirl Bread made today. K said, “Double to the cinnamon swirl!” So, if I’m not too tired, I’ll make it today and increase the swirl! haha! I’m going to share half of it with K’s mom. She really liked my first loaf. YAY!

Be well and be careful with this heat. *hugs*

Life: full of fun!

Living On Oxygen for Life

Happy Day After April Fools Day! I’ve never been into the whole “April Fools” thing since the time my little sister wrapped a raw egg in foil and put it in my bed while I slept. Yep, I rolled over onto it and the egg broke, leaked egg guts and made a mess in my bed. Yuck! So, April Fools? No thank you! haha!

K and I have been BUSY lately. My garden is growing like crazy! We have little tiny cherry tomatoes growing (3 of them…wow!) and my potato plants are getting huge. I even ate my first strawberry from the garden and it was DELICIOUS! So sweet! Yes, I shared it with K. I didn’t really want to because it was so good but there was only one berry and it would have been rude of me not to share. Right?

I’ve started crocheting again. I had stopped in October since K was having trouble with his eyes. Things got hectic with his Glaucoma and Detached retina problems. And I thought taking care of my own problems was hard. Add helping K with his medical stuff (no lifting heavy things for 2 weeks for each eye surgery), it was a little crazy around here. Here’s what I’m working on right now:

I’ve been a little inventive in the kitchen lately. I created a protein shake that can rival Starbucks’ mocha, caramel frappuccino. It is delicious and I want to try making a peanut butter, chocolate protein shake (without the bananas). Here’s the ingredients that I used:

Rivals Starbucks Frappuccino!

I told you I’ve been busy lately. In fact, K made one of my dreams come true. Yay K! My older sister dug up a pond liner (hard shell) from their yard when they moved into their house and gave it to us. Of course, K said no we can’t have a pond. So, many, many years I have been working on him about having a pond. Yes, we kept it THAT long. Out of the blue, he asked me a couple of weeks ago, what I thought about having a pond. Of course I was overjoyed, ecstatic even. Naturally I said YES! Picture me jumping up and and down cheering and then bending over out of breath saying… “Whew, I’m tired now. But, let’s do this!”

I have to let you know. I AM A PLANNER. I like researching things I want to do so I know what I’m doing once I start a project. K is the opposite. Kind of. So, it took us a couple of tries to stack the flagstone to make it look almost the way we want it. Let me tell you… those are so heavy! K did all the hard labor but I still wanted to help with some of the physical stuff. I tried moving the flagstone and after four stones, I was done. K told me to go sit down. I like being involved in our house projects. The way I was involved was helping pick out the type of stone, fish, and planning how the pond will look. K wanted to name the goldfish with Beatles names. Ugh! Really? I named one of the goldfish, Thunder! K named one of them White (not Whitey, he says)… So, I call him White Ghost because he’s an all white fish. Clever, I know! We have a total of 8 fish. 5 small goldfish and 3 medium goldfish. It was hard to get K to wait until the water was ready for fish.

Bamboos just added my dream pond.

I also have 9 flowers on my lemon tree! NINE!!!
Please don’t fall off… Please don’t fall off!
I even caught a sale at the grocery store for fresh green beans! Late last night, I washed and blanched them so that I could freeze them. They are so much better than green beans from a can. Blech! I only wish that I had bought 2 bags of them instead of one. Darn it!

Yes, life is good. I have things to look forward to every day. Feed my fish, check my garden, and pray for lemons to produce on my Meyer lemon tree. Hooray! All these things help keep me happy which distract me from bad breathing days which is awesome. I hope life is going well for all of you.

Life is amazing!

Living On Oxygen for Life

For most of us who have respiratory problems, the Winter months can be tough to get through. I try to stay home as much as possible so that I’m not exposed to people who are sick. I know… I wish they would stay home too. Because I stay home, I get cabin fever. Seeing it overcast outside and cold, really makes me feel blue.

By the time January rolls around, I’m getting excited because I know the next month I’ll be planting my garden beds. Hooray! So, I get out the graph paper and plot out where and in which bed I want my seeds. We also decide what our newest “experiment” crop (K likes to call them crops now. He’s slowing getting into being a farmer. *wink*) will be. This year I let K decide. He chose something that I have wanted to try since last year. Corn!! How exciting, right?!?

Now we don’t have a lot of “farming” space for corn. So we are only planting one row of 6 or 7 plants in the actual ground (not a raised bed). We also decided we need more strawberries and more of a variety of tomatoes. K got pretty handy and found our old window planter boxes for the strawberries and I had an idea to mount them on the side of the garden beds. Nifty!

2018 Spring Garden

I love getting creative! We have hanging baskets of cherry tomatoes too. Hopefully they will be successful. I don’t have a lot of energy to take care of all of this but K has really taken the lead on the watering the garden so that I can enjoy watching all the vegetables grow. There’s just something rewarding about watching & caring for the things you plant to grow into the vegetables you later eat. This excitement helps motivate me. The joy and motivation I get from my garden is the main reason K is onboard with helping me with it. He does what he can to keep me moving and exercising my lungs. Not to mention all the yummy vegetables we’ll get to eat!

So are you ready for some warm weather??? Lots of love to you all!!

With the new year… it brings changes.

Living On Oxygen for Life

And now for something new… drama! I realized this past weekend that I had a letter on my refrigerator which I’d slapped under a magnet back in October 2017. Of course, you all know me by now to think… “oh dear, that can’t be good!” If you’re anything like me, you stick important things on the fridge, right? You know, things you DO NOT want to forget. Especially if it’s from the health insurance company.

This important document I have stuck on my refrigerator informs me of a change for the new year. Don’t worry… I was thinking the same thing.. “but these people never give THAT much of an advanced warning.” Am I wrong? Of course not! So I put it on my refrigerator so I wouldn’t forget.

Well, I forgot all about it because my brain just doesn’t retain all the things that have happened since October. Life was happenin’ around K and me. How was I supposed to remember that my Specialty medicine for my Pulmonary Hypertension was going to be dispensed through a different pharmacy? This is the medicine that I have to get labs done every month to even get a refill of this stuff.

I can only say that it’s truly inconvenient and very stressful for a patient, who must take this life-sustaining medication, to have to make this transition at all. It hasn’t been a smooth transition to the new pharmacy because I never have an available refill of this medicine due to needing lab work done every month prior to calling…then wait as I listen to at least 5 minutes of elevator/on hold music, for a refill.

Now I’m stuck within the slow grinding process of the new paperwork and out of medicine. They are supposed to call me when the pharmacy is finished “processing” my account to set up a delivery date. Meanwhile, I’m at home with no one other than myself to blame and feeling like I am slowly suffocating. I’m very short of breath and it’s a constant reminder to never let this happen again.

It’s pretty hard to juggle everything that has been going on in mine and K’s life lately and to have this slip from my memory makes everything seem like a crisis to handle right now. So, when my husband asks me to handle something for him, I start feeling a little buried right now.

For sanity’s sake, I made myself step back to calm down. I’m making a list to prioritize what “crisis” I should handle first because when I start feeling buried, everything feels like a crisis. From there, all of this mess will start to look clearer. I hope! haha!

The Beast Within… (repost)

Living On Oxygen for Life – a repost from 2016 because this is so important to read if you are dealing with anxiety and control issues.

Over the past 10 years or so, this beast inside me has grown and mirrored the decline of my health. It all started with what I thought was constant worrying. You know… when you have to time how much your oxygen will last? Well, that can make you worry about checking your oxygen tank a LOT when you are out having fun. Then I would worry about how long my energy will last while I was out having fun. Can I walk that far in the mall or in the hospital for doctor appointments? Will K get upset if I need to stop to sit down for a few minutes. I know the last one is kind of an irrational worry. Of course K wouldn’t get upset but he did try to push me to walk a little further before stopping which only made me feel like he wasn’t taking my need to stop seriously. My health wasn’t as progressed as it is now. So, pushing me a little bit further was a good thing that K was doing. It’s just when I was tired and felt like I needed a break, no knows how I felt except me.

I turned all this worrying about so many things in my life into trying to control everything around me. I felt like I needed to manage everything so that I had enough energy for things that I had to do around the house and the things that I wanted to do with K. I wanted to know where we were going when we were out of the house, what route we were going, and even how K drove. I needed advanced warning when K wanted us to go out to have fun so that I can be sure to rest up during the day. But all that wasn’t working. Trying to control everything turned into Anxiety because there is no way that I could control everything, be happy and not irritate those around me.

It’s taking a long time to learn to let go of the control issues. K reminds me by saying that he “Gets it.” and “I will always take care of you. I always have your best interest as my priority.” It has helped me a lot with him saying this to me. I have to remind myself of what he said over and over because my memory doesn’t retain information as well as it use to. So, when I get into my vehicle with K, I will remind myself that he has my six. *wink* Giving up the control and learning to trust is a very hard thing to do for me because I feel as if I’m losing more of my independence. However, as long as we have fun in our lives, all will be ok.